Reflections on TS – a year without meds

My son has been off of all meds since Christmas Eve, 2007. It has been quite a year. We have witnessed dramatically reduced volatility, improved sleep, astronomically elevated levels of distractibility – ADHD combined with a twelve-year-old brain – and, in recent months, ever-worsening tics.

For years, I have said that tics are the least of my concerns when it comes to living with TS. Origami has had obvious tics since he was three years old, but his tics always were of what I would call “moderate” severity: he had many tics, they were always present, but all were relatively small. To an outsider, he looked like an extremely fidgety child who stammered. This year, especially in the last three months, Origami’s TS has changed from “moderate” to “severe.”

First, there was the extreme echolalia. If you have never witnessed someone retelling – re-enacting – all of Over the Hedge or an “Indiana Jones” movie, complete with sound effects, well, you just will have to take me at my word when I tell you that it is an excruciatingly awful experience. I am not sure if the echolalia has ebbed recently, or if we just have become numb to it, but it is not inducing migraines in the same way as it was earlier in the year.

The tics went to a new level of severity in September. The worst one is a “flipping”tic. O lunges forward at the waist, arms flung stiffly out behind him. He looks like he is about to do the long jump or dive into a swimming pool. On a really bad tic, O will actually flip all the way over! On several occasions, O has had one of these tics at tae kwon do – while in the middle of a jump or spinning kick. It really hurts to see the poor kid flip over in mid-air and go flying across the room; O already has injured his groin doing this, and I worry that he will suffer more serious injuries in the future.

Efforts to stem the flipping tic using habit reversal have backfired. We have tried to help O resist the tic by crossing his arms over his chest. The result: the tic comes out anyway, through O’s head and neck. So, now, O also spends much of the day jerking his head to one side. This tic is rather pronounced: I was walking toward O at the mall last week. Before it registered in my mind that the child was O, I found myself thinking that that poor child had an obvious, painful-looking head/neck tic. O later confirmed that the tic is, indeed, painful.

So, what is a parent to do? The available medications help – a little bit. But the available medications also have many side-effects. We discontinued meds when we decided that the side-effects were worse than O’s symptoms. Now, I am not so sure that I can still say that. However, I also believe that O is old enough to have a voice in his own treatment. I have mentioned meds as a possible option to manage the tics and the tic pain, and O has expressed absolutely no interest in resuming medication. So, I do my best to help. I offer regular back rubs, pain relief, and heat, along with concern and sympathy, and I keep hoping that the tics will decrease – soon.